Week 17: Healing

The line between illness and healing has been a wide and blurry one for me. There has been no particular day that I can say “this is the day I began to heal.” Rather, it has been a process of careful decisions, conscientious effort, and my body’s unique timeframe. It is a process that I suspect will continue for some time, and may take many more weeks or longer. But I can say, that life is slowly returning to “normal.”

This past week was not a bad week. My sleep has actually improved (if only by minutes) and even though there were a few quirky things that occurred this week (see ODD THINGS), there was nothing to really worry me enough to consider mentioning to any health care personnel.

Early in the week I received a phone call from the gastroenterologist who performed my EGD, the stomach and small intestine biopsies, and the genetic screen for celiac disease. She told me that she had done the screen for the two genes that most commonly show celiac and that I had neither gene. She went on to tell me that even though celiac can be found on other genes, in her opinion the likelihood of that was extremely unlikely and rare. She stopped short of saying I did not have celiac, and in fact said it could still be a possibility, but she was feeling it may be gluten intolerance or even an allergy to wheat. Regardless, she recommended a follow-up with the internist who diagnosed the celiac and further recommended a visit with a dermatologist regarding the rash on my right forearm.

Not having the gene for celiac made me rethink all of my symptoms from the family history of digestive disorders, the onset of the rash five years ago, to the visits to the ER, the myocarditis, the osteopenia, the general symptoms of malnutrition and malaborption (inability to absorb nutrients which went on for years). What other illnesses or diseases could cause these types of symptoms? Why, after almost four months of going gluten-free, is my skin beginning to feel soft and supple again (after a lifetime of rough and bumpy skin)? Everything still seemed to point to celiac disease. Could a gluten intolerance have the same affect on the small intestinal villi?

I believe that I was at my sickest in mid-January of this year—about a month after going g-free, and about two-and-a-half months after radically changing my diet. Originally thinking I had GERD, I had stripped my diet of all dairy products, fatty and/or fried foods, sugar, citrus, and acidic foods. Six weeks into the GERD diet, I further eliminated all gluten. A month later, I was suffering from congestive heart failure, and an almost nonexistent immune system. Could a radical change in dietary habits cause this type of strain on my heart?  Is it normal to get sicker on a gluten-free diet before getting better?

Being a member of two different celiac disease support groups, I posed this same question to the members there and received a resounding YES! I was surprised by the number of people who experienced the same story, some of which had the exact same symptoms that I experienced. Coincidence? Maybe, but it is something to think about.

Also, still having issues with the Vitamin D (ergocalciferol) and its propensity to make me feel bloated and distended, I did some research and found that large doses of magnesium may be helpful until the distension passes (http://www.easy-immune-health.com/is-constipation-a-side-effect-of-vitamin-d-comments.html and www.ctds.info/magdiet.html), so I determined to ask the doctor about this during my follow-up appointment. Could I be slightly magnesium deficient? Toward the end of the week I resorted to the good ole’ fashioned milk of magnesia cure, which worked beautifully by the next morning.

My follow-up appointment with the internist went very well, and though he gave me the option of testing myself with small amounts of gluten, he stuck to his original diagnosis of celiac disease. There are just too many other factors that point to the disease (not discounting the possibility of a gluten intolerance), and the genetic tests are not the best diagnostic tool, which made sense to me.

He also told me that the Vitamin D capsule I’m taking is made from pig’s feet (the shell coating) and that I may be having difficulty digesting it, and that when I take the Vitamin D, I should cut it open and put it in applesauce. He also told me to take 600-800 mg Magnesium with it-- that high a dose because only about 10% is actually absorbed through OTC supplements.

ODD THINGS THIS WEEK:

• Random hives mostly on my fingers
• Inner trembling returned this week, though fairly mild.
• Pain under mandible off and on for a few days.
• While at dance performance, my right ear started aching. It was a generalized ache—one I at first mistook for the beginning of a headache. But it occurred later and was more distinctly in the right ear and not a headache. This has been happening every day since then. I hope it has nothing to do with the prosthesis. In the 21 years since the prosthesis was put in place, I have never had a problem with that ear.

My “physical therapy” continued to go very well this past week. All treadmill walks were perfectly normal and without stress. Totals for the week include 180 minutes of Pilates, 100 minutes of weight-bearing exercises, and 18.94 miles walked.

So even though the road between sickness and health has been bumpy beyond belief at times, and sometimes the road nearly imperceptible, the rocks and potholes are gradually thinning out, and I am beginning to see more smooth pavement than gravel.

It is a good feeling.

Week 16 Recap: Celiac or Gluten Intolerant?

Well, it’s here! Summer has unofficially arrived in Montana after our usual 7 months of winter followed by 8 hours of spring. We may get hail storms from time to time through the summer, but I don’t expect any more snow until this fall. Yet, you know what they say in Montana, never say never!

On to last week’s recap in my adventures of going gluten free…

I am actually still in the process of determining whether I even have celiac disease or not. We are in the final throes of testing—the genetic screen has been sent to California to determine whether I have the gene for celiac or not. The results should arrive later this week. All other tests and biopsies at this point in time are normal.

My follow-up with the GI specialist went very well. My blood pressure was 102/80 and my pulse was 76. I am not IgA deficient, so that is nice to know. There was no sign of cancer or any disease in my stomach and small intestine—only a small 3 mm hiatal hernia. She recommended that I stop taking Prilosec (omeprazole) in the evenings, and take it only in the mornings, half hour before breakfast. After a month or two, I am to reduce the Prilosec to every other day for a month or two, and then eventually stop taking it altogether. Additionally, the GI specialist also wants me to see a dermatologist for the DH (dermatitis herpetiformis) once the results of the genetic screen for celiac comes in.

ODD THINGS THIS WEEK:

• Some twitching and slight thumping in chest, followed by slight pain to left of sternum as well as left subclavian and achy left arm.
• Very slight fluttering in chest several different times this week
• One morning, while eating my morning yogurt, my tongue started tingling. Not long after, my hands were feeling numb and flushed.
• Late in the week I experienced a painful double heart palpitation which caused me to cough, while sitting on my bed working on my laptop.

My “physical therapy” went very well this past week even though I was not able to spend as much time with Pilates as I normally do. All my treadmill walks (two daily 30-minute walks, 6 days a week) went very well and I did not feel stressed or tired, or pain in any way… pretty much normal walks. Exercise totals for the week include 60 minutes of Pilates, 30 minutes of weight-bearing exercises, and 18.66 miles walked.

Though I can only speculate what my serology results and biopsies would have shown three or four months ago when I first suspected celiac disease, my current lab results are all completely within the normal range for everything.

The following quotes I found in the Winter 2009 edition of the online “Easy Eats” magazine (“Easy Eats: The magazine for gluten-free living”), and thought they were especially pertinent in my particular case:

“Celiac disease patients with lesser degrees of villous atrophy are less likely to have positive celiac serologies” (“Digestive Disturbances and Science,” 2004).

"Recent literature data showed that serology (not only EMA, but also anti-tTG) seems to be ineffective in detecting most patients affected by subclinical/silent disease" -- i.e., gluten sensitivity rather than celiac disease ("Digestive and Liver Disease," 2007).

"If eliminating gluten from your diet results in your body feeling better, that is a positive test" (Dr. Vikki Peterson, DC, CCN, Founder of HealthNOW Medical Center, 2009).

Whatever the case—celiac or gluten intolerant—the treatment remains the same. The next question will be: is gluten intolerance inherited (should my kids be worried)?

Week 15 Recap: Still Learning

Did you know that most Yoplait Lite yogurts contain aspartame? I had been so busy looking for “GLUTEN FREE” on the labels I failed to notice the aspartame listed in the ingredients. I don’t react every time to aspartame, but suspect I am more sensitive to it now, than in the past.

I think I accidentally glutened myself over Easter weekend… one of those things that in retrospect I ask myself “What was I thinking?” I used distilled white vinegar in a recipe and think that may have done it. As to whether vinegar is safe or not, is debatable.

According to Gluten Free: The Celiac Site:

“Distilled vinegar (or white vinegar) has been listed as unsafe for people with celiac disease by the major organizations in the United States, but not by organizations in any other countries. This position changed in 2001. The Gluten Intolerance Group® and the Celiac Disease Foundation now state that all vinegar (except malt vinegar) is safe for people with celiac disease to consume. The American Dietetic Association has also stated…that distilled vinegar is gluten free.”

While according to Celiac.com and the Celiac Sprue Association (CSA):

“Distilled vinegar, however, is still on the CSAs ‘Low Gluten Items to Avoid List.’ The CSA still maintains that distilled vinegar and alcohol are ‘questionable,’ even if there is no detectable gluten/gliadin in them, and even though the Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF) and the new guidelines from the American Dietetic Association (ADA) all include them on their safe lists . The CSA urges celiacs to ascertain the source of any questionable ingredients from their manufacturers.”

I may have been reacting to something else, such as Hershey’s Kisses, but it sure felt like a gluten stomach-ache! Do achy joints have anything to do with being glutened?

The results to my EGD (endoscopy) last week came in, and both biopsies of the stomach and small intestine were normal. Yay! The doctor did not expect to find anything relating to celiac due to the time I’ve spent gluten-free (three months now), but there was also no sign of GERD (gastroesophageal reflux disease). This does not mean I don’t have reflux, it just means it hasn’t advanced to the stage of disease—so I guess I have caught it early enough, which is a good thing!

Besides waking up in the wee hours of the morning every single day and not getting enough sleep, the week was not a bad week. In fact, my treadmill walks were the best ever, feeling almost completely normal! For the first time in about eight weeks, my heart was feeling stronger and stronger—almost as if it has healed. I hope that is the case.

ODD THINGS THIS WEEK:

• A little pain to the left of my sternum, off and on for a couple of days.
• Minor left subclavian pain, off and on all week.
• Tingling tongue, and upper lip, also!
• Strange hives on my knuckles during the week.
• Minor right subclavian pain for about three days.
• Weirds pangs under mandible again.
• Fluttery sensations in chest from time to time, particularly when not feeling well.

“Physical Therapy” totals for the week include 55 minutes of Pilates, 60 minutes of weight-bearing exercises, and 18.309 miles walked.

It is ironic that the more I learn about celiac disease and how my body reacts to gluten, the less I realize I know about celiac and my body!  I am still learning, but it is a good learning.  Because I can be somewhat stubborn and hard-headed, it may take a couple of times to get through my head, but getting through my head it is-- and hopefully sooner than later-- I will finally reach the "Level Two" step (Step 1 = Beginning self-management and Foundation; Step 2 = Intermediate self-management and Expansion; Step 3 = Advanced level self-management and Maintenance) (Celiac Sprue Assocation).

This second step of "rehabilitation" includes (CSA):

• Establishing an individual treatment plan
• Keeping a daily diary and recording all intake, amounts, and reactions
• Identifying and eliminating immune-response triggers
• Waiting 2-4 weeks before reintroducing new or questionable items.
• Expanding knowledge of CD/DH

 Just when I think I have reached Level Two, I end up back in Level One, still trying to figure it all out.  15 weeks and still learning...

Week 14 Recap: Finding "Normal"

This week I found out that our neighborhood has levels of PCE (the nasty carcinogen, tetrachloroethylene) higher than the state allows due to the laundromat leakage in 1989 about a block away, and have been wondering what this means for us... I've always believed this house was making us sick. I drink more water than anyone in this family and I drink it out of the tap. If PCE isn't in the water, is it in the ground? We’ve kept a vegetable garden for years! Our house was not one of the random houses tested, but it would be interesting to know.

Well, back to the recap:

I’m beginning to believe ergocalciferol (prescription dose Vitamin D) might be causing or contributing to what I call occasional “left subclavian” pain— pain that is in the general area below my left shoulder that tends to follow the left subclavian vein/artery. Sure enough, within a day of taking the ergocalciferol, this annoying and random pain was back. The good news is that it is not a long, sustained pain, but something that is just felt off and on throughout the day.

On Wednesday morning I went in for the EGD (esopagogastroduodenoscopy), in which the doctor sent a scope down my esophagus and took a look around. At 8:30 in the morning, I was prepped and ready to go. My blood pressure at the time was 106/72, and I was hooked up to a saline IV solution. By 9:15 I was wheeled into the procedure room full of monitors and equipment.

The nurse told me she was going to inject some medicine into my IV that would make me sleepy, and then told me to lay on my left side. I proceeded to lay on my left and the next thing I remember, I was waking up in a completely different room, the procedure already completed. I was informed that the doctor had tried to talk to me but apparently I was still out cold. It doesn’t take much to knock me out, it just takes a bit to keep me there! I don’t have complete memory of laying on my left side, so I am sure somebody must have been there to catch me. We joked later about the medical staff taking bets to see how long till the patient hits the table.  Somebody could have scored big on me!!

As it turns out, I have a “small hiatal hernia” and biopsies were taken from both the stomach and the duodenum (small intestine). I doubt anything will turn up regarding celiac disease since I have been gluten-free for three months (to the best of my knowledge and abilities).

After the procedure, I felt a bit woozy, but otherwise fine. I tried to sleep off the medication, but in a noisy house full of kids, telephones, and barking dogs, even a medicated sleep was impossible. Oh, how I would have loved to sleep! Once the medication finally did wear off I realized just how sore my throat, stomach, and small intestine actually were! To top it off, I had to deal with this achiness for about two more days, including the continual taste of blood in the back of my throat, and an unpleasant three-day flare-up of acid reflux.

The arrival of the weekend marked my next dose of ergocalciferol, and right on schedule, I felt the first definite heart palpitation I’d felt all week and a double palpitation later in the day. I was also experiencing left subclavian pain again off and on all day, just when the same pain earlier in the week had finally settled down. One other thing I noticed with the ergocalciferol is that for a day or two after taking it, my stomach will feel somewhat glutened and achey. I’ve been having doubts as to whether there isn’t some cross-contamination or small amount of gluten in the pill.

ODD THINGS DURING THE WEEK:

• A headache enough to make me nauseous-- not so much when I sat down but whenever I stood-- both sides of the head.
• Left arm felt slightly numb, and the front of my left shoulder a little achy, and left hand tingling-- on two separate days during the week.
• Tongue began tingling again, late in the week.
• In the wee hours of one morning I woke up enough to feel a heavy trembling in my neck.  I was too groggy to worry and noticed only that it was a very heavy trembling when compared any previous trembling I had felt.  I fell back asleep almost immediately.

Week 14's "physcial therapy" went well.  My treadmill walks seemed easier — no palpitations, congestion, or pain that I noticed.  I totaled 115 minutes with Pilates, 80 minutes with weight-bearing exercises, and walked 16.35 miles. 

In spite of some very minor setbacks with the EGD procedure and possibly with ergocalciferol, it was a good week.